Our son Magnus was born November 19, 2009 with a serious congenital heart defect, HLHS. I set up this blog to keep our family and friends updated on his condition, and to connect with other families dealing with HLHS.
The cath lab just called with an update. Apparently everything looks good and he doesn't have any collaterals they need to coil, so no nasty surprises there. The nurse I spoke to didn't say anything about his pressures or Fontan eligibility. But they're just going to open up the stent he has in his pulmonary artery, and then they'll be done.
Dropoff in the cath lab went pretty well. They actually used oral versed and then IV meds rather than gas to sedate him. People often report that their kids get "goofy" with the versed, but with Magnus's normal goofy baseline, he didn't really seem any different! He just started talking more and more slowly and then went to sleep.
Iggy and I had a nice lunch/dinner. Now we're in the UCSF library waiting for the call to go back and pick Magnus up.
Magnus got his IV, and as usual, he barely flinched. The child life specialist seemed skeptical when we told her that Magnus is usually very stoic for IV placements and blood draws and that he never cries, but both she and the IV nurse were pleasantly surprised. He's been busy playing with hospital toys and watching Spongebob on the iPad...so much so that he hasn't even asked us for anything to eat or drink. And now that he has his IV, they're giving him some fluids and glucose, so hopefully that should keep him relatively comfortable. So far everything has been as easy as we could have possibly hoped, with the exception of having no idea when he'll go back for the cath.
Well, we're here at the hospital. So far, Magnus has been having a great time charming the nurses and playing with the toys Child Life brought him. Apparently the first case in the cath lab started late, so I'm assuming that means we'll start late, too. In about half an hour, they're going to place his IV, so they just put some numbing cream on him. The last few times he's had IVs or blood draws, he's been very stoic about it, so hopefully that will still be the case.
And we are second case, which sucks. It means that Magnus can't have any food after 3 a.m. and nothing by mouth after 7 a.m., but we won't get started until after they finish with the first case, which could be late morning or possibly some time in the afternoon (looking back over my past posts, the last 2 times we were second case, he went in at 3 p.m. and 1:30 p.m.) We're going to wake him up around 2 a.m. tonight for a "midnight breakfast," which we're trying to get him excited about, as he is generally grumpy when awoken.
I'll do my best to keep up with the updates here tomorrow.
Wow, last post October 2012! That is a good thing. Since then, life has been pretty normal. Magnus goes in for a cardiology checkup every few months and it always looks good. He's only been hospitalized once in the last two years, and that was back in October 2013 when he came down with a stomach virus that required an IV for hydration. And even then, we were never really worried.
But now, things are likely to get complicated again. On Friday, Magnus will go to UCSF for a cardiac catheterization, his eighth overall, but his first since January 2012. They're calling this his pre-Fontan cath...the main goal is going to be to measure the pressures in his pulmonary circuit to see if he is a good candidate for his third planned surgery, the Fontan procedure. As you may recall, his candidacy has been in question for some time now because he has had pulmonary hypertension, which makes the Fontan risky. His pulmonary hypertension is the reason why he was on supplemental oxygen 24 hours a day from October 2010 until July 2011, and why he still takes Viagra. At the last cath his pulmonary pressures were better, but they made no promises about his Fontan chances.
If he's not a candidate, his prognosis will be significantly worse, and he will likely go into heart failure and need a heart transplant by the time he's 10 years old or so.
If he does have the surgery, he has a good chance of continued good health for quite a long time--maybe 20, 30, 40 years, or beyond. But some kids don't do well with this surgery. Even if he is determined to be a candidate, he will be "high risk" due to his pulmonary hypertension. There's a possibility he could come out of this surgery considerably weaker than he went into it.
There's a lot of stuff here that is out of our control. We're trying to do whatever we can for the things that are (somewhat) in our control. We are going to try to get our insurance to cover us to travel to either Boston Children's Hospital or Children's Hospital of Philadelphia to have the Fontan there (assuming that Magnus is a candidate). These are the two hospitals that do the largest number of these surgeries in the U.S. and have the most institutional experience. If we can't get approval to go to Boston or Philadelphia, our next choice would be Stanford, which also has a larger program than UCSF. We are lucky that Iggy and I both have some flexibility in our jobs, although the flip side of that is that neither of us gets any paid time off. We're hoping that after this summer, we'll have another long period in which we won't have to be quite so flexible anymore.